February 29 - Rare Disease Day 2012

celebration of the European Rare Disease Day: A Rare Day for Very Special People. The organisation of this awareness Day is coordinated by Eurordis at the European level and by National Alliances at the national level. Many events will take place throughout Europe.

external link

7th ICORD Tokyo

4-6 February 2012 Convention Hall, University of Tokyo, Japan

V II International Conference on Rare Diseases and Orphan Drugs

A global meeting on international cooperation and public health policies focussing on research, diagnosis, development of and access to treatment, and care for rare diseases, will be held in Tokyo.

• Research
• Diagnosis
• Treatment
• Orphan drugs
• Health policies on rare diseases and orphan drugs globally
• Ethical issues and social aspects of rare diseases
• International networking
• Patients' needs

for more information:
http://www.prip-tokyo.jp/icord2012

source: Eurordis

Video on rare diseases

RARE DISEASES CONFERENCE 2011 - Video

A video presenting European initiatives for rare diseases and featuring Commissioner for Health and Consumers was presented at the Rare Diseases Conference 2011.

Video

People living with rare diseases ask for plans

People living with rare diseases ask for plans, or national strategies, in 25 European countries.

Diagnosis

Health professionals have long been so helpless in front of a rare disease that they often did not even dare to make a diagnosis.  Not any more. Diagnosis is now available for about 1,900 diseases, though not one single European country can provide all existing tests. Use of existing treatment and drugs has improved. Increased numbers of orphan drugs are now on the market. Rapid progress is made in advanced therapies. Today no one should have the right to say to a family: “nothing can be done”. EurordisCare studies* show that diagnosis alone considerably improves quality of life  and life expectancy by reducing unnecessary medical interventions, inappropriate treatments (including psychiatric), the birth of other affected children, maladapted family behaviour and the loss of confidence in medecine. No diagnosis: no treatment. For example: gene therapy, recently successful for children born with adrenoleukodystrophy, must be implemented as early as possible in life to prevent irreversible brain damage.

National plans

How to give isolated patients and families equal access to early diagnosis and care? By bringing together all available expertise and resources. In 1993, Denmark organised two centres of expertise for rare diseases, then Sweden and Norway. In 2001, Italy designated regional centres. France implemented the first national plan for rare diseases from 2005 to 2008, soon to be followed by Bulgaria, Romania, Spain and Portugal. Following the Recommendations of the European Council of Ministers, plans are currently in preparation in Germany, Hungary, Ireland, Denmark, Sweden…Everywhere, patients and their associations are playing a key role throughout the process. What do we want in a national plan or strategy? Integration of all initiatives and resources: improved diagnosis linked to better awareness, information, training of professionals, clinical laboratories and centres of expertise; centres of expertise instrumental for research, registries and clinical trials, good practice guidelines, improved social care. Last but not least, long term sustainability of appropriate health and social policies, vital necessity for 30 millions patients affected in Europe by one of the 6,000 to 8,000 rare diseases.

Learning from each other across Europe

Norwegian-Romanian (NoRo) Partnership for Progress in Rare Diseases

Rare disease events in Europe